Why are you an HDSA Advocate?

Advocacy is a natural extension of the work I do as an HDSA social worker.  I work every day with individuals, families and small groups coping with the myriad of difficulties HD throws in their path.  Advocating for change on a larger scale seems like a good use of time.  I can only hope that one day my work on HDSA advocacy, for example with the HD Parity Act (S. 723/H.R. 1015), will prevent each individual I work with from having to fight the Social Security system and instead allow every person with HD to smoothly qualify for federal benefits.

How did you start advocating?

 I started small.  I filled out the online template provided by HDSA and sent them off to my legislators.  Then I tried to schedule a meeting with a staffer.  We weren’t successful, but it got my feet wet and calmed the nerves for future meetings.  Then I saw that another legislator was hosting a Town Hall meeting.  So I organized a few HD families and we showed up.  (By the way, sit in the front row on one of the ends – that’s how I got to speak first!)  From there we requested a meeting with the staffer and I organized a whole room of HD families to talk to him about the HD Parity Act.  I followed the materials and training provided by HDSA, so I was very prepared!  This led to follow up emails and letters to the editor by several of us in attendance and eventually an in person discussion with the actual Senator by one of the guests at our meeting.  Eventually, despite what we had originally been told, this Senator signed on!

What special perspective do you bring to advocacy, and why is this perspective important?

As a social worker, I have the experience of being a part of many people’s lives and have stories galore to share about the difficulties families face.  I think sometimes we are seen by the legislators and staffers as more objective or neutral and our university designations don’t hurt.  That isn’t fair really, since HD families really know everything, but if it helps open the door, it is one more approach to take.

What is the most rewarding part about advocacy? 

Seeing your hard work pay off – it is quite an energy boost to see a Senator or Representative you have been working on sign on to the bill.

What is the biggest challenge you’ve had with advocacy, and how did you resolve it?

My biggest challenge was a personal one – getting outside my comfort zone.  I am not naturally a person who can ring someone up and talk to them about policy.  But with the training HDSA provided, and several attempts under my belt, I felt more and more confident each time.

Why do you think it’s important for others to get involved?

We are a small community dealing with a disease that most people really don’t know much about. It is impossible for just one of us to make the impact necessary to guide change.  But just one of us plus thousands of others working toward the same outcome WILL make an impact.